How long to wait to re-treat? Post TX PCR.

[jmjm530]

Feeling very positive finishing my 2nd week without Peg and my first without riba -- but being the pro-active soul I am, a couple of questions:

(1) Some of you like Calio, have jumped right back on the treatment bandwagon within days/weeks of relapse. Goofy, I believe has indicated he'd do the same thing in case of relapse.

Others, have indicated their doctors wanted them to rest/heal like 6-months or so before re-treating, as mine once suggested.

First, for all those who re-treated, how long did you treat and how long did you wait before re-treating, and what logic if any did your doctor give you?

And related, did any of your doctors discuss in detail the why's or why nots of re-treating sooner or later. I ask this second part because one way of looking at it is to hit it hard again before the virus has time to get strong. Another way, is to take a rest and let the immune system get strong before re-treating.

(2) So when exactly is the 4-week post-tx PCR/TMA?
When we count our treating weeks, we start with the Peg shot. So our treating week 4 PCR would be the day before our 5th shot. I'm assuming it works similar post treatment, except the difference is post tx we already start with drugs in our system. So do you start counting from the day of your last shot. Or, do you start counting from the day of your last riba?

Here's my example. Last shot Wed March 8th. Last Riba Wed March 15th. I therefore think my week 4 PCR/TMA should  be Tuesday April 4th. But counting from last riba would make it April 11th. Any input welcome.

Thanks.

-- Jim

[zazza]

Looking good, purplecat. I do wish you SVR, partly because of selfish reasons, since I also had that "29" at week 12.

[jmjm530]

That was s t r a n g e. LOL. Or as Yogi once said, de ja vu all over again :)

I think your doc is a bit on the conservative side which is fine. From what I've gathered, about a 90% chance of SVR if you're UND four weeks post treatment. As to the 3-month post treatment test, some say 98% but a newer study suggests it correlates 100% with SVR as long as you're not a stage 4. Still excellent odds if you're a stage 4, just not a 100% correlation.

Also, to answer my own questions -- most docs seem to wait 6-12 months before treating again, a few don't. We had a thread on this recently. Also, probably best to count four weeks from the last riba pill for the post tx 4-week PCR, but I ended up testing at week 2 and week 6. Then week 24 (official SVR) and at one year post.

Good luck to your SVR!

-- Jim

[purplecat]

GREAT THREAD JIM!  I'm now at the similar time period with same questions you found yourself back in late March 2006. I did last INF shot 03Aug07 and last riba 09Aug07.  

I got my result of 4 week post PCR of UND from 07Sep07 test(4 week after riba, 5 week after INF).
Like you I can't help planning and getting myself mentally ready for the big 3 month post PCR.  DR said 95% chance of SVR if still UND 3 month post but nothing about chance if UND 1 month post..

I'm checking threads of those that have gone before me to try to better statisically guess my chances at this point. I'n not trying to make myself crazy as some might think but also am a planner and  can handle outcome better if I'm prepared.

This thread pinpoints right where I'm at today and really helped me. I thought bringing it back for further comment will also help others.

Any relapsers and SVR's have any additional input?  
  

[jmjm530]

Stupid question. Have you had your PCR double-checked? A new study recently suggested there are more false positives and false negatives than one would think. I also read on Dr. Dieterich's web site, where he never makes a major treatment decision based on only one PCR. BTW thanks for the encouragment and understanding. You know the position I'm better than most -- maybe the best considering your recent scenario.  All the best luck moving forward in treatment, you certainly seem to have a very positive attitude plus lots of determination. You and NYGirl ought to bottle it up and the rest of us could inject some of it with our peg and riba.

-- Jim

[jmjm530]

Meant "99% determined" at week 12, not week 2.

[jmjm530]

Don't remember the post but check my math here: If SVR can be 90% determined at week 4 -- and 99% determined at week 2 -- then mean must be less than 4 weeks and I figured around 2, which btw happens to be when my doc usually does his first post-tx PCR which I may just pass on since don't see the point unless I was going to re-treat right away which brings me to you other question to Kalio...

The question isn't so much whether or not you should do a 1-week, 1-week, 3-week, etc, post tx PCR but whether or not there's greater efficacy to treat right away after relaspe. Kalio's doctor seems to indicate there is. Mine thinks there's an advantage to wait a few months for the immune system to strengthen. What does your doctor say? Seems like different opnions on this.

Lastly, have you found your callendar yet? I need someone to check my math on when to do the 4-week post-tx PCR. You know callendar -- that bound thing, with boxes and such, with a different naked lady each month in an unmentionable pose :)

-- Jim

[GoofyDad]

Jim says:
<i>it's just my nature is to to keep fighting until the deed is totally done</i>

Shameless self promotion on a largely female msg board?
<hr>

Kalio, Sorry to keep dragging you into this... but here's a question for everyone. Why isn't it standard protocol to test at 1-2-3 weeks post tx, and restart tx immediately if virus is found. I mean, if we can restart in that timeframe without loosing preciously gained ground, why isn't everyone testing early?  
<hr>

Jim, One of those 4 links posted by cuteus last week had a breakdown of when relapse was detected. I looked back and could find it, but I remember a confusing sentence about mean relapse in 4 weeks. Did you happen to see it?

[Dale_Ray]

Jim: Quick note - my doctor told me when the treatment was over that 12 weeks post was the most accurate / optimum time to do a complete work up and see if the beast was back. I don't know if that is based on his personal experience or data. I am a 1A and that may be the factor as well. He said he had a very good feeling that we would nail it though and he is a pretty conservative fellow so that made me feel good. Dale

[jmjm530]

NY: Jim you are done
---------------------

OK. OK. I'm going to Disneyland then. LOL.

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BTW I hope you're holding up with your little set back and if you think you're going to be so luck and be able to eat fudge pops for the rest of your life without losing weight, dream on. From what i underdtand many with inteferon-induced graves disease can be cured, so hopefully they'll be calling you "fatty" soon. LOL.  

Just remember, how hard you fight has to be weighed against how much is at risk. In my case, I'm around a stage 3. You have less damage if I remember correctly, so hopefully you will keep that in mind when making treatment decisions. I had absolutely no desire to treat at all until I heard I was stage 3 -- actually, they told me I was between stage 3 and 4, which was a mistake.

-- Jim

[NYgirl]

Boy aside from all the extra Riba...is it any wonder I turned out with this disease like I did?

Jim said: just my nature is to to keep fighting until the deed is totally done

And people wonder why I'm so gung ho?   :)  One of the problems of falling under the Jim Squad - you become absolutely the craziest most determined person on the planet...and that is a good good thing.

Jim you are done - you know it stay positive and soak up all those little extra energy bursts ahhhh I can't even imagine how marvelous they must be?  :)

[jmjm530]

Thanks for the well wishes. I actually am very positive (although no one seems to believe me LOL) it's just my nature is to to keep fighting until the deed is totally done -- and in this case that would be SVR. The only reason thing I'm researching now is if there's a time-sensitive reason to re-treat sooner, and I'm starting to come to the conclusion there isn't. A more plausible scenario in the statitically unlikely event I relapse -- would be to watch and wait for the newer drugs. BTW I did get a little surge today of that "new found" energy which got me going on this. But now I think I'll take a nap. LOL.

-- Jim

[jmjm530]

Goof said: I think Kalio's doc is viewing this as a continuation of her tx, because they caught it in time. That certainly sounds attractive to one who was considering extending anyway.
-----------------
So using her doc's logic, that would argue for weekly post-tx PCR's for those planning on re-treating. OK. I'll let the whole post-tx thing drop for now since we're both gonna SVR anyway.  



-- Jim

[mikesimon]

I meant "luck" not "lick" - I wasn't trying to be cute that time. Mike

[mikesimon]

Susan, you really are an inspiration. I think of you often and not just HCV related areas. I wish you good lick Susan. Mike

[GoofyDad]

IMO the PCR/TMA s/b PDQ!

I'm thinking 4 weeks, but we'll see.

I think Kalio's doc is viewing this as a continuation of her tx, because they caught it in time. That certainly sounds attractive to one who was considering extending anyway.

I'll maybe email into the doc and get his opinion on that strategy. I know he's reluctant to test too much when there is no clinical significance - and I tend to agree. We'll see.

As far as when to retreat, I guess it in part depends on the above. If that didn't pan out, I'd probably wait a few months, then fire it up again. Maybe would try a taste of the peg-intron next time.... it seems so popular...

Of course this is all academic. I honestly am not stressing it. I was stressing the decision to stop, but now I'm cool.  

Hey Tate. Yup I stopped. Hoping for the best now.

[jmjm530]

(1)So when are YOU having your first PCR/TMA or is that TBD; and (2) how long do you plan on waiting to re-treat in the small event of relapse, or are you staying more in the moment? Sounds like Calio jumped right back on the tx horse but my doc wants me to wait at least six-months and from the gist of the conversation today, it would probably be with a protease inhibitor in some combo or another.

-- Jim

[GoofyDad]

Your stamina is an inspiration for many. Wow - 2x riba. My 1,200 riba had me under the table. Nasty stuff, that.

[GoofyDad]

Thats OK. I was done with those pages anyway....

[susan400]

Since this is my 8th round of treating, I've come off of treatment and then, took a break, several times.  I always felt like I needed a break to be able to get some sanity back.  My last break before this treatment was for 5 mon and most of that I had to deal with a herniated L5-S1 disk, which needed surgery.  To be honest, whenever I finally do get off of treatment this time, I'm going to be SOO ready to be off of it.  Especially on the Riba since I've been double-dosing that.

Susan400

[jmjm530]

Yes, 3-months correlates to 6-months give or take a point according to some recent stuff. The virus supposedly escalates quickly and that's why such a high correlation between 4 week and 3 month to 6-month, etc, possibly even to the 2-week -- if I'm following you. And then there some people who are clear for quite some time and then relapse although some will argue a certain per cent of those are re-infection and a small percent could even be false positives. Two hepatologists I spoke to said they have seen false positive relapsers in their practice and never re-treat without re-testing. If the second test comes out negative, a false positive is assumed since the virus is not supposed to play hide and seek. But who really knows.  Apologies if you lost some of your favorite pages flipping your callendar for me.

-- Jim

[GoofyDad]

Sorry for the delay. To answer your question I had to flip forward on my calendar, and for some reason the pages were stuck.

Anyways, I'd venture it would be the 11th, but I guess it really matters what the convention is.

Wow! 90% at 4 weeks and 99% at 12? I thought it was more like 99% at 6 mos or 12 mos? Maybe I do remember something about 3 mos being similar to 6 mos when sensitive tests are used, but that seems to contradict the theory that the virus will escalate quickly, doesn't it?

It never ends......

[jmjm530]

I didn't understand logic of the 2-week post-tx PCR either (he also does a 4-week, 3 month, 6 month, etc) but as always, he leaves it more or less up to me. Basically, I was going to let his whole thing lie for about 3-months, but than Kalio's doctor wanted her to start treating right away and got me thinking if there's a compelling reason to do it or not. The feeling I'm getting, however, is that there's nothing documented in this regard and simply differing opinions.  And then there's THIS...

Cuteus posted a study recently about controlled tx interruption. My doc didn't particularly like it for a number of reasons (he likes to rest folks for six months at least ) but I find it sort of fascinating if the data holds behond a cohort of 2. LOL. The thing I like is that it theoretically minimizes drug exposrure. If it works that is. :)

http://tinyurl.com/oryb5

-- Jim

[Algernon]

I suggest a 3 year old black standard poodle with no training.  He is very affectionate, very adorable, babe magnet.  Only eats Moist and Meaty so requires occasional toothbrushing (HCV immune, so you can use your old toothbrush).  FREE SHIPPING.

[DoubleDose]

I think the retreating issue has more to do with how you feel after finishing tx.  If you are still feeling pretty strong, not burned out, and then show a quick relapse, in that case I think you could conceivably begin again as early as you liked.  I do not know that there is much comparative data out there regarding efficacy of quick retreatment, versus delayed retreatment.  None that I am aware of, anyway.

I think you might get more meaningful info. from a 4 week post-tx PCR, than a 2 week test.  The one month PCR would give the virus time to reassert itself, if it is still around, and it would probably show up on the ultra sensitive qual. or quant. test.  If you are undetected at one month post-tx, I think your odds are very good...probably over 90% or even higher, that you will become SVR.

Stay confident, and try to relax...I think your odds are good, judging from your early response, and having gone almost a full year being undetected.  Did you keep your inf. and riba. at the same levels throughout???   I think you are in good shape on this issue, and I am really expecting to see an ongoing set of 'undetected' PCR results over the coming months, and throughout the first year off tx.  I think you are probably feeling pretty confident as well, so don't do TOO MUCH homework on retreatment unless your PCR outcome is radically different than expected.  Enjoy your initial weeks and months off therapy...it is a wonderful feeling!!!!!

Good luck Jim, we are all pulling for you.  I enjoy your input and contributions to the forum.  You are ready to be promoted to one of the 'Senior Consulting SVR Alumni Member' roles on this forum.  Be prepared to change hats!

DoubleDose